Delivery of holistic care to persons with spina bifida/myelomeningocele remains a complex challenge to clinicians in the field, researchers in academic settings, and public health agencies charged with assuring best practice standards. The National Spina Bifida Patient Registry is uniquely positioned to directly support these complex challenges. The leadership, site participants, and individuals who comprise the entirety of the Registry are experts in the field; the structure is well defined, rigorous, yet adequately flexible for ready change when shifts are needed for quality purposes; and there are continuing outcome products (publications, reports, etc.) that reflect the value of the enterprise. The Spina Bifida Program at Texas Scottish Rite Hospital for Children (TSRH) in Dallas, TX, an active participant in the Registry, continues to expand both in numbers of families served and in the broad spectrum of services and programs available for pediatric patients. For over 25 years, there have been ? at any time along the way ? about 850 to 900 families actively engaged in the Spina Bifida Program Clinics at TSRH. While the majority of these patients come from about a 100-mile radius from the hospital, the Program serves children throughout Texas: El Paso to Dallas; Lubbock to Austin. The diversity of the population is reflective of that in the North Texas region: a slight majority of non-Hispanic white, a near- majority with Hispanic background, and about 10% Asian or Black background. A slight majority carry commercial insurance; a near majority have Medicaid; and a minority carry both. The parents represent a wide socio-economic and educational diversity. The diverse demographic population allows for large, balanced cohorts for both clinical research and reports. Because of the historically unique system of financial support to families by the Hospital and the nature of the services provided, the longitudinal follow-up of patients from birth to adulthood remains remarkably high. Willingness to participate in clinical studies remains high as well. This has allowed the Program to conduct longitudinal research in addition to robust cross-sectional studies. To this point, the Hospital has been able to support to some degree the activities specific to the demands of the Registry. The TSRH Spina Bifida Program can better maximize its potential as a Registry participant, expand the activities of the Program, and advance new initiatives with funding support from the Registry. We are presently involved in two specific initiatives for outcomes studies; funding support should allow greater time and focus of our present research coordinator for added research projects. Through this project we propose the following aims: 1) Continue to collect longitudinal data on individuals with spina bifida in order to identify variation among the NSBPR clinics, 2) Participate in and implement data quality strategies in order to ensure reliability across clinics, and 3) Collaborate with other sites to develop research projects addressing scientific gaps in the spina bifida population.
Spina bifida, a birth defect affecting both brain and spinal cord function, remains a leading cause of infantile paralysis across the United States with the potential for motor differences, incontinence issues, learning issues, as well as various combinations of these. As such, the impacts on daily function and overall health-related quality of life can run the spectrum: minimal impact to severe impairments. The breadth and depth of data being collected within the National Spina Bifida Patient Registry remains the best source of information for both collaborative researchers and clinicians who are dedicated to the enhancement of care to infants, children, youth, and adults with spina bifida and their families.
